December 2014

December 27, 2014

The Importance of EB Awareness

A quick post today-I made this graphic for my ebinfoworld.com website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important....

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December 15, 2014

Infections Beware!

On our first trip to Stanford, back in August 1997, Dr. McGuire told us something that would forever be etched in my mind. He told us that the #1 enemy and the #1 reason for the demise for children with RDEB was infections. To say he scared me to death...

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December 14, 2014

The Best Holiday Gift You Can Give Me!

From one crazy overwhelmed mommy to another, I need your help! The best holiday gift you can give me, in anticipation of my release of the book Butterfly Child – A Mother’s Journey (due out in early 2015) is a review of my book “Losing Alex”, which is a FREE...

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December 5, 2014

Ask Nicky!

I will be done with my book real soon, and then comes the hard part of selling it or self-publish it, we’ll see. However, in the new year, I want Nicky himself to be able to answer questions on a video I will make of him which I will then...

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